Newbie

[musicteach85]

Hello! I just received my second ivig treatment. The first resulted in a trip to the ER because of Charlie horse muscle spasms and migraines. In was getting sick with a virus. I just had my second infusion. The spasms aren't as bad, but I've had a headache for three days. Each day has been easier than the one before. Does this happen to anyone else?

[Cllcanada Top Poster CURE Hero]

Hi and welcome to the community

I have never had IVIG , but know many who have. You should discuss switching to the new subcutaneous version, SCIG, that is a few fine needles under the skin. It stops the infusion issues perhaps.

The treatments can be done at home, and take under an hour...

CLL patients report that the weekly ones have a more even control, and are much easier to tolerate...

They are called SCIG... here is one brand , there are many now...

hizentra.com/benefits

~chris

[SeymourB in reply to Cllcanada]

I started with 2 small needles, and now use a single small needle - shorter and thinner than a hypodermic needle.

I find I don't need the benadryl or acetaminophen.

[lfm73]

I always get Tylenol and benedril before each IVIG and have no side effects.

[noeagaman]

I just got my fourth IVIG treatment on Monday and have not had any side affects accept from the steroids they give me to prevent side affects. They also give me benedril and tylonol as well. The steroids cause me to lose a lot of sleep for about two days and then on the third day I feel like a zombie. Other than that the IVIG seems to be doing its job. Have not gotten sick since getting them. I had bronchitis and an upper resperatory infection before I started on the IVIG's and that was the reason my doc decided to put me on them.

Chris

[SlowCLL]

musicteach85,

Welcome, you came to the right place for advice.

I had absolutely no problems with nine monthly Privigen IVIGs that were prepped with with Benedril and Tylenol. Due to the Benedril I usually slept through the procedure and most of the rest of the day. These infusions combined with antibiotics ended a long series of lung infections, pushed my IgG count up over 1,000, and significantly reduced fatigue. Unfortunately, I began having allergic reactions after the tenth IVIG, tried a another IVIG solution and had a similar reaction, so I switched to weekly subcutaneous infusions. The subcutaneous infusions seem to be easier on my system and just as helpful in warding off infections, and reducing fatigue.

Good luck,

Owen

[thb4747]

I’ve had 40+ IVIG infusions since 2013 without any prepping and absolutely no issues.

[SeymourB]

I am on SCIG - Cuvitru - but only for 4 months now.

cuvitru.com/

Everything I've read indicates that people who have trouble with IVIG side effects often do better on SCIG, because it's given in smaller doses more often. I do 10g of 20% serum weekly, and it takes less than an hour. You can do it at home.

Some people also try IVIG serum from a different manufacturer, and find that it relieves the side effects.

Ask you doctor about your options.

=seymour=

(amateur musician in a family of amateur musicians)

[AussieNeil Administrator]

Headaches (and tiredness) are commonly reported side effects, but a headache for three days is rather excessive! Definitely see if you can switch to subcutaneous infusions. It takes me about 2 hours, less in warmer weather, as the IgG is less viscous. I've detailed my experiences with both delivery methods here:

healthunlocked.com/cllsuppo...

healthunlocked.com/cllsuppo...

[MsLockYourPosts Passed Volunteer]

16+ years getting IVIG infusions monthly until recently. I now go every other month and combine the visit with a check with my hematologist. I learned early on ( overheard a nurse telling another patient and asked her about it) that often just switching brands - doesn’t matter from what to what, just different - often solves the problem.

I have only had one reaction and that brand was eliminated. A couple of years ago I had a couple of episodes of headaches and was having bad leg spasms at night - not connected to IVIG treatments. It turned out that it was the benedryl that I was reacting to (one tablet and one Tylenol for infusions) and Advil PM, which includes benedryl. I now take 10 mg of love Claritin plus one Tylenol- no IV antihistamine and no steroids, and I have no reactions.

Many prefer the sub q version. I’m happy with the IVs.